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National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Cancer Australia
NATIONAL
ABORIGINAL AND
TORRES STRAIT ISLANDER
CANCER FRAMEWORK
2015
i
National Aboriginal and Torres Strait Islander Cancer Framework was prepared and produced by:
Cancer Australia
Locked Bag 3
Strawberry Hills NSW 2012
Australia
Tel: +61 2 9357 9400
Fax: +61 2 9357 9477
www.canceraustralia.gov.au
© Cancer Australia 2015
ISBN Print: 978-1-74127-296-2 Online: 978-1-74127-294-9
Recommended citation
Cancer Australia, 2015. National Aboriginal and Torres Strait Islander Cancer Framework, Cancer Australia,
Surry Hills, NSW.
National Aboriginal and Torres Strait Islander Cancer Framework can be downloaded from the Cancer Australia
website: canceraustralia.gov.au.
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Contents
Statement of acknowledgement............................................................................................... 2
Foreword ............................................................................................................................................ 3
Purpose............................................................................................................................................... 4
Aim....................................................................................................................................................... 4
Context............................................................................................................................................... 4
Development of this Framework............................................................................................... 8
Principles............................................................................................................................................ 9
Priorities............................................................................................................................................ 10
Priority 1....................................................................................................................................... 11
Priority 2..................................................................................................................................... 12
Priority 3..................................................................................................................................... 13
Priority 4..................................................................................................................................... 14
Priority 5..................................................................................................................................... 15
Priority 6..................................................................................................................................... 18
Priority 7..................................................................................................................................... 19
Acknowledgements...................................................................................................................... 21
Thanks and appreciation........................................................................................................... 22
Glossary............................................................................................................................................ 24
References....................................................................................................................................... 26
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Statement of acknowledgement
We acknowledge the traditional owners of country throughout Australia, and their continuing
connection to land, sea and community. We pay our respects to them and their cultures, and
to elders both past and present. We would like to thank Aboriginal and Torres Strait Islander
people for their contributions, without which this National Aboriginal and Torres Strait Islander
Cancer Framework would not have been possible.
Cancer Australia acknowledges that there is no single Australian Aboriginal and Torres Strait
Islander culture or group and that there are many diverse communities, language groups and
kinships throughout Australia. However, when presenting data we will be respectfully using
the term Indigenous Australians.
2
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Foreword from the Minister
In many respects, the Australian health system is the envy of the
world. Australian people enjoy universal access to high quality health
care and subsidised medicines. The benefits of this system are
evidenced by continual improvements to life expectancy and other
measures such as cancer mortality rates.
Unfortunately, like many other critical health measures,
improvements in cancer survival rates have not been enjoyed to the
same extent by Aboriginal and Torres Strait Islander peoples.
Alarmingly, the cancer mortality gap between Indigenous Australians
and non-Indigenous Australians has grown. Without appropriate
action, that gap is likely to grow further.
Between 1998 and 2012, the cancer mortality rate for nonIndigenous Australians fell by 10%. During this same period, the cancer mortality rate for Indigenous
Australians increased by 16%. These results are as confronting as they are disturbing.
Aboriginal and Torres Strait Islander people also continue to face significantly higher risk factors for
cancer. For instance, the smoking rate for non-Indigenous Australians aged 14 and over currently
sits at 12.8%. By contrast, the smoking rate for Indigenous Australians aged 15 and over is more than
40%. If we can reduce risk factors like this, the unacceptable disparities in cancer mortality rates will
improve.
This Framework provides strategic direction in cancer control to reduce the unwarranted variations
in Aboriginal and Torres Strait Islander cancer outcomes. With time and commitment, the
implementation of this Framework will reduce disparities and improve outcomes for Indigenous
Australians with cancer.
I commend the work of Cancer Australia and Menzies School of Health Research as well as the many
organisations and individuals from around the country who contributed to the development of this
Framework. Their combined knowledge, expertise and commitment to take this Framework forward
will maximise outcomes for Aboriginal and Torres Strait Islander cancer control efforts across the
health sector.
Signed,
The Hon Sussan Ley MP
Minister for Health
Minister for Sport
3
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Purpose
The National Aboriginal and Torres Strait Islander Cancer Framework (the Framework)
provides high-level guidance and direction for the many individuals, communities,
organisations and governments whose combined efforts are required to address disparities and
improve cancer outcomes for Aboriginal and Torres Strait Islander peoples.
This Framework is designed to complement and enhance national, jurisdictional, regional
and local efforts to improve Aboriginal and Torres Strait Islander cancer outcomes, including
cancer plans and related policies, frameworks and action plans. It sets out priority areas for
action, and allows the flexibility for jurisdictions, communities and organisations to address
those priorities in ways that suit their local context and local needs.
This Framework encompasses the full continuum of cancer control, including cancer
prevention, screening and early detection, diagnosis and treatment, palliative care and
survivorship; and the policy, systems, research and infrastructure that surround these
service areas.
Aim
By providing this direction and identifying the priorities that most require attention, this
Framework aims to improve cancer outcomes for Aboriginal and Torres Strait Islander peoples
by ensuring timely access to good quality and appropriate cancer related services across the
cancer continuum.
Context
Cancer among Aboriginal and Torres Strait Islander peoples
Australia’s record of cancer survival is one of the best in the world, yet Aboriginal and Torres
Strait Islander people continue to experience disparities in cancer outcomes. Cancer is the
second most common cause of death for Indigenous Australians (20%), after cardiovascular
disease.1
Aboriginal and Torres Strait Islander people:
4
•
ave a different pattern of cancer incidence, with some cancers occurring more commonly
h
than amongst non-Indigenous Australians (lung, liver, cervical cancers), while other
cancers occur at lower incidence rates (prostate, bowel, breast cancer among women) 2
•
ave high incidence of cancers that are preventable but are also more likely to be fatal
h
(lung cancer, liver cancer) 2
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
•
ave higher levels of modifiable risk factors relevant to cancer including smoking,
h
risky alcohol consumption, poor diet, low levels of physical activity and high levels of
infection such as Hepatitis B 3
•
are less likely to participate in cancer screening programs 3
•
a re more likely than other Australians to be diagnosed when cancer is at an advanced
stage of development 4
•
are less likely to receive adequate treatment or be hospitalised for cancer 1
•
ave a slightly lower rate of cancer diagnosis but a 30% higher mortality rate than
h
non-Indigenous Australians (221 and 172 per 100,000 respectively, age standardised
mortality) 2
•
ave had a significant increase in the mortality rate due to cancer (16% between 1998 and
h
2012) while the cancer mortality rate for non-Indigenous people has fallen significantly
(10% over the same period).1 This means the Indigenous to non-Indigenous mortality gap
due to cancer is likely to continue to grow
•
a re much less likely to survive five years after a diagnosis of cancer than non-Indigenous
Australians. This difference is greatest within the first year following diagnosis. On average,
74% of non-Indigenous Australians will survive for one year beyond a cancer diagnosis,
but only 61% of Aboriginal and Torres Strait Islander people will survive for the same length
of time 3
•
f ace significant burden of disease, with cancer being the second leading cause of fatal
burden of disease for Indigenous Australians.5
Smoking rates amongst Aboriginal and Torres Strait Islander people, although improving,
remain higher than in the broader Australian population, and smoking remains a major cause
of cancer.3 Lung cancer remains the major cause of death from cancer for Aboriginal and
Torres Strait Islander and, along with other smoking related cancers, makes up a large
proportion of the cancer burden.3
Aboriginal and Torres Strait Islander people also have high levels of a number of other risk
factors for cancer, including obesity, lack of exercise, risky levels of alcohol consumption and
hepatitis infections.3
The most common cancers among Aboriginal and Torres Strait Islander people after lung
cancer are breast cancer (among women), bowel cancer and prostate cancer.2
5
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Defining good quality cancer care
Increasingly, definitions of ‘quality’ in cancer care have broadened to extend beyond the clinical
treatment of disease. 6, 7 A range of contextual factors can impact on the uptake of treatment
and engagement with cancer control activities across the continuum of care, and are therefore
important to recognise within the concept of quality in cancer care.
Within the context of improving the cancer outcomes of Aboriginal and Torres Strait Islander
peoples, ‘quality cancer care’ is defined within this Framework as care that:
6
•
is based on the best available evidence or good practice guidelines with regard to
effectiveness, safety and impact (taking into consideration contextual factors including age,
co-morbidity, quality of life and patient preferences and choices)
•
is person centered so that the whole person (including family and cultural role) is
considered, and the psychosocial, cultural and supportive care needs and preferences
of Aboriginal and Torres Strait Islander people are addressed across the continuum of
care 8
•
is multidisciplinary and integrated across health sectors (primary, secondary and
tertiary care) and into the community (including referral pathways to primary care,
allied health and other relevant community services) 9
•
incorporates quality improvement processes for ongoing assessment, review, evaluation
and improvement of care 6, 10
•
includes strong involvement and leadership from Aboriginal and Torres Strait Islander
people (including those affected by cancer) to ensure care is effective and appropriate
to their needs and preferences 10
•
ccurs in a timely and equitable manner, and delivers best practice care as close to home
o
as (safely) possible 11, 12
•
is delivered by skilled and caring staff with effective cross-cultural communication skills,
supported by organisations in which cultural competence is embedded as integral to
quality and safety. 6, 10
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Concepts fundamental to Aboriginal
and Torres Strait Islander health
Key concepts which are fundamental to Aboriginal and Torres Strait Islander health, including
cancer control, have been considered in the development of this Framework.
A holistic approach to health and wellbeing
Aboriginal and Torres Strait Islander concepts of health extend beyond the physical wellbeing of
an individual to the social, emotional and cultural wellbeing of the whole community in which each
individual is able to achieve their full potential as a human being. 13
The diversity of Aboriginal and Torres Strait Islander peoples
Aboriginal and Torres Strait Islander people and communities are diverse, including across gender,
age, language, geographic location, sexual orientation, religious beliefs, family responsibilities,
marriage status, life and work experiences, personality and educational levels. 14
The social and cultural determinants of health
Aboriginal and Torres Strait Islander health is significantly affected by the social and cultural
determinants of health. Aspects of the broader social environment that can influence (in a negative
or positive way) the capacity of individuals, families and communities to engage with health care
and manage their own health. 15 For Aboriginal and Torres Strait Islander people, the social and
cultural determinants of health may include support from family, community and church groups,
connection to culture and country, a sense of empowerment or self-efficacy, education and literacy
levels, poverty, marginalisation from the dominant culture, racism, poor housing, poor nutrition,
smoking and other high risk behaviours, and living in remote areas. 16-20
7
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Development of this Framework
This National Aboriginal and Torres Strait Islander Cancer Framework was developed by
Cancer Australia in partnership with Menzies School of Health Research. The project was
overseen by a Project Steering Group, which had a majority of Aboriginal and Torres Strait
Islander members.
The development of this Framework was informed by two major strands of work:
1. A review of the evidence
A systematic literature review of qualitative and quantitative evidence was conducted to examine
the issues, gaps and priorities for improving cancer outcomes in Aboriginal and Torres Strait Islander
peoples. This included population health data on Aboriginal and Torres Strait Islander peoples,
papers from peer-reviewed scientific journals and unpublished (or ‘grey’) literature. The review
provided the evidence base which informed the structure for the stakeholder consultations and
development of this Framework.
2. Stakeholder consultations
A range of consultative approaches were used to reach stakeholders across Australia, in order
to maximise engagement in the development of this Framework. These approaches included
six face-to-face forums in locations across Australia in urban, regional and remote settings,
a widely circulated online survey and online discussion boards.
Key stakeholder groups targeted included:
•
Aboriginal and Torres Strait Islander people affected by cancer, their families and carers,
community leaders and advocates within communities
•
Health professionals and service providers who work with Aboriginal and Torres Strait
Islander people in cancer control, prevention, diagnosis and treatment, including the
community controlled health sector
•
Indigenous and non-Indigenous peak professional bodies and associations
•
Non-government organisations, researchers, state and territory governments and
Commonwealth departments.
Several hundred people from across Australia provided input into the development of this
Framework via these consultations. A high proportion of participants were Aboriginal and Torres
Strait Islander people, including many directly affected by cancer, their families and carers.
8
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Principles
This Framework is underpinned by the following principles:
1 Aboriginal and Torres Strait Islander people are engaged and involved
throughout the planning, design and delivery of cancer services
Evidence shows that services and programs for Aboriginal and Torres Strait Islander people are
most likely to be effective when Aboriginal and Torres Strait Islander people are integrally involved
throughout the process of development and implementation. 19, 21 This applies to services across
the cancer continuum including prevention, screening programs and early detection, diagnosis
and treatment, supportive and palliative care, and survivorship programs; as well as the physical
infrastructure and environments in which services are provided.
2 Patients, families, carers and communities are informed and empowered
Aboriginal and Torres Strait Islander patients, families, carers and communities are entitled to have
the opportunity and capacity to make well informed decisions about cancer and cancer care, and
to feel that their views and decisions will be listened to respectfully. 6, 22
3 Working together towards a common goal
Improving the cancer outcomes of Aboriginal and Torres Strait Islander peoples is a shared
responsibility. It is a responsibility shared between Aboriginal and Torres Strait Islander people,
communities and organisations and the broader health system and health workforce. Achieving
change in a complex health system requires action across multiple levels of the health system, 23, 24
by numerous independent organisations, communities and individuals, working towards a common
goal (in this case, improving the cancer outcomes of Aboriginal and Torres Strait Islander peoples).
Shared leadership and robust partnerships are needed to ensure that there is clarity of the goal and
effective strategies for achieving it, while still ensuring the flexibility for jurisdictions, communities
and organisations to address the goal in ways that suit their local context and local needs.
4 Policy and practice informed by reliable data and evidence about what works
Improving the care and experience of people affected by cancer requires: timely access to relevant
information about patient needs, progress and outcomes; evidence-based clinical and service
guidelines; and data about the extent to which those guidelines are being applied. 6 Policy and
practice relevant evidence, and service data are crucial to strengthening the quality of services
across the cancer continuum to guide policy and improve practice, and to build an efficient and
sustainable cancer control system.
9
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Priorities
To realise our aim the following priorities should be addressed:
Improve knowledge, attitudes and understanding of cancer by individuals,
1
families, carers and community members (across the continuum)
2 Focus prevention activities to address specific barriers and enablers to minimise
cancer risk for Aboriginal and Torres Strait Islander peoples
Increase access to and participation in cancer screening and immunisation for
3
the prevention and early detection of cancers
4 Ensure early diagnosis of symptomatic cancers
Ensure Aboriginal and Torres Strait Islander people affected by cancer receive
5 optimal and culturally appropriate treatment, services, and supportive and
palliative care
Ensure families and carers of Aboriginal and Torres Strait Islander people with
6 cancer are involved, informed, supported and enabled throughout the cancer
experience
Strengthen the capacity of cancer related services and systems to deliver good
7 quality, integrated services that meet the needs of Aboriginal and Torres Strait
Islander people.
Addressing the priorities for action
The next section provides an overview of each priority and presents enablers that may help in
planning or reviewing strategies to address each of the priority areas for action.
10
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Priority 1
Improve knowledge, attitudes and understanding of cancer by individuals,
families, carers and community members (across the continuum)
The evidence review and consultations reaffirmed the findings of earlier reports 10, 29 that a
widespread lack of knowledge about cancer, its causes and symptoms, treatments and likely
survivability is a significant barrier to improving the cancer outcomes of Aboriginal and Torres
Strait Islander people. Across all three forms of consultation, Aboriginal and Torres Strait Islander
people emphasised the benefit of community based action, engagement and empowerment to
help build understanding about cancer and increase support for those affected by cancer, their
families and carers.
Enablers
•
Enhance community capacity to promote cancer literacy and to support Aboriginal and
Torres Strait Islander people affected by cancer.
•
Engage and support key community people (survivors, leaders, champions and peer support
groups) to promote cancer literacy and share their lived experiences about cancer to reduce
misconceptions.
•
Ensure community involvement throughout the development of public awareness and
health promotion campaigns.
•
se evidence-based public awareness programs and health promotion strategies that
U
specifically address the concerns and needs of Aboriginal and Torres Strait Islander people
at particular points along the cancer continuum (e.g. broad community requires general
knowledge about cancer, symptoms, survivability, screening; those diagnosed or supporting
those affected by cancer require more specific knowledge).
•
Ensure that information is available and accessible to Aboriginal and Torres Strait Islander
people across the cancer continuum, in formats and language/s that are culturally appropriate.
•
Recognise that gender specific strategies may be needed, depending on local context.
•
Enable community based primary health services to deliver cancer related health advice in a
culturally safe environment to encourage Aboriginal and Torres Strait Islander patients and
their families to ask questions, seek further information and return for follow up if required.
•
ake cancer awareness and educational opportunities available and accessible to Aboriginal
M
and Torres Strait Islander communities broadly, as well as Indigenous and non-Indigenous
health professionals (e.g. by adapting existing accredited Aboriginal and Torres Strait Islander
cancer education modules).
•
romote cancer literacy through broader forums (e.g. at community or school events, other
P
chronic disease and health related events) and through other sectors such as the arts or sports.
11
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Priority 2
Focus prevention activities to address specific barriers and enablers to
minimise cancer risk for Aboriginal and Torres Strait Islander peoples
Smoking is the major risk factor for cancer among Aboriginal and Torres Strait Islander people;
with 42% of Aboriginal and Torres Strait Islander people aged 15 years and older are still smoking on
a daily basis 1 and smoking related cancers make up the majority of cancers affecting Aboriginal and
Torres Strait Islander people. 26 The high prevalence of smoking and other risk factors including risky
levels of alcohol consumption, obesity, poor nutrition, low levels of physical activity and chronic
infections such as Hepatitis B, could contribute to the higher cancer mortality rates observed in this
population group. 3
Enablers
12
•
Use evidence-based, best practice public awareness programs, health promotion and other
strategies that address the specific concerns and needs of Aboriginal and Torres Strait Islander
people; developed by or with Aboriginal and Torres Strait Islander people.
•
Ensure public awareness programs, health promotion and other strategies take into account:
the impact of social and cultural determinants of health; place-based approaches suited to
local contexts; and the concerns and needs of sub-groups such as men and youth.
•
Maintain national, jurisdictional and community momentum on tobacco control and increase
attention on other key risk factors including physical inactivity and obesity, chronic infections
and alcohol consumption.
•
Facilitate the integration of cancer prevention activity, including screening and immunisation,
within primary health care and other chronic condition prevention activities (e.g. healthy living
programs, and adult health checks), taking into account existing workforce and organisational
capacity.
•
Focus prevention funding on ongoing programs to sustain the impact of prevention activities.
•
Ensure Aboriginal and Torres Strait Islander Health Workers, nurses and other Indigenous and
non-Indigenous health professionals, are skilled and enabled to deliver key cancer prevention
messages to Aboriginal and Torres Strait Islander people.
•
Adopt a systems level approach which utilises a range of strategies, including education and
public awareness, legislative and regulatory reforms that support prevention activities and
reduce cancer risk. National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Priority 3
Increase access to and participation in cancer screening and immunisation
for the prevention and early detection of cancers
Many potentially preventable or screen-detectable cancers are more common among Indigenous
Australians than non-Indigenous Australians, 27 including cancers associated with chronic
infections such as Hepatitis B and Human Papilloma Virus (HPV). Indigenous Australians have
lower participation in screening programs than non-Indigenous Australians. 3 It is likely that
lower participation by Aboriginal and Torres Strait Islander people in cancer screening programs
contributes to the high incidence of preventable cancers (such as cervical cancer), and survival
of cancers where early detection can significantly improve outcomes (such as bowel, breast and
cervical cancers). 26
Enablers
•
Increase Aboriginal and Torres Strait Islander peoples’ involvement with screening programs
and in planning and delivery of local screening and early detection activities (e.g. employ
Aboriginal and Torres Strait Islander staff; develop partnerships between screening programs
and primary health care or other community based services).
•
Strengthen community capacity to increase cancer literacy and encourage participation
in screening and immunisation, including through key Aboriginal and Torres Strait Islander
community members, cancer survivors, champions and Health Workers.
•
Ensure regular primary health care checks include discussion and reminders about screening.
•
Increase access to screening services by addressing barriers by making screening services less
confronting or alienating and more culturally appropriate, including through gender appropriate
screening facilities, staff and approaches.
•
Ensure follow up of abnormal results in ways that facilitate timely diagnosis and treatment
if required.
•
Promote quality improvement initiatives that encourage screening and primary health care
services to use their own data, including client feedback, to inform planning and improve the
quality of screening services for Aboriginal and Torres Strait Islander people.
•
Identify and address barriers to participation in screening or early detection activities for
specific groups or cancer types (e.g. men and bowel cancer screening).
•
Increase the capacity of Indigenous and non-Indigenous health professionals to discuss
screening and immunisation with Aboriginal and Torres Strait Islander people.
13
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Priority 4
Ensure early diagnosis of symptomatic cancers
Indigenous Australians are more likely to be diagnosed with cancer that has progressed to an
advanced stage than non-Indigenous Australians 4, 8, and this may contribute to higher mortality.
Barriers to timely diagnosis include comorbidities masking cancer symptoms;
lack of knowledge about cancer, its symptoms and survivability amongst Aboriginal and Torres Strait
Islander communities; fear (of the potential effects of treatment, of having to spend lengthy periods
away from family and country undergoing treatment) and the general barriers that Aboriginal and
Torres Strait Islander people may experience in accessing health services. 10
Enablers
•
Improve knowledge about cancer symptoms and the benefits of early detection (for both
community members and health workforce).
•
Increase engagement of Aboriginal and Torres Strait Islander people with primary health care by
addressing barriers to access, fears of cultural alienation and limited health literacy; expanding
the Aboriginal and Torres Strait Islander health workforce.
•
Increase access to diagnostic services, particularly in rural and remote areas.
•
Support all health professionals working with Aboriginal and Torres Strait Islander patients
to apply culturally safe approaches to discussing diagnosis, treatment and other aspects of
cancer care.
•
Follow or establish agreed appropriate referral pathways that are known and supported by
practitioners (including Aboriginal and Torres Strait Islander Health Workers and nurses).
•
Increase awareness amongst primary health care practitioners of Aboriginal and Torres Strait
Islander cancer as a priority, the potential for comorbidities to mask symptoms, and increase
integration of cancer within chronic disease programs.
•
Identify opportunities to strengthen connections between cancer specific services and primary
health care services.
14
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Priority 5
Ensure Aboriginal and Torres Strait Islander people affected by cancer receive
optimal and culturally appropriate treatment, services, and supportive and
palliative care
Culturally safe services and a culturally competent workforce that is able to address the needs of
Aboriginal and Torres Strait Islander people are core requirements for improving cancer outcomes.
Increased use of multidisciplinary care teams that include cultural as well as clinical expertise
could support culturally appropriate quality cancer care, particularly in rural and remote areas. Late
diagnosis of cancer may mean that treatment options are greatly limited or more complex. Treatment
options may also be compromised by comorbidities. However, Indigenous Australians are likely to
receive less active treatment for cancer than non-Indigenous Australians, even after controlling for
comorbidities. 7 The reasons for lower treatment rates are not clear.
5a
Ensure a skilled and caring workforce with effective cross-cultural
communication skills
Enablers
•
Expand opportunities for the Aboriginal and Torres Strait Islander health workforce to work
across the cancer continuum within cancer related services.
•
Ensure the Aboriginal and Torres Strait Islander health workforce is supported through ongoing
opportunities for professional development that are accessible and lead to better quality of care.
•
Embed cultural competence as an integral part of quality and safety programs for cancer related
services and development programs for health professionals.
•
Develop and use protocols, decision or communication aids to enhance effective
communication between clinicians and Aboriginal and Torres Strait Islander people with
cancer, their families and carers.
•
Increase the availability of interpreters for Aboriginal and Torres Strait Islander languages
where appropriate.
•
Ensure that all health professionals working with Aboriginal and Torres Strait Islander patients
have adequate training and skills in delivering culturally safe health care and medical advice.
15
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
•
Ensure that training is standardised, ongoing and accessible to all areas of cancer related
services including accommodation facilities and psychosocial support services.
•
Ensure that all health professionals are trained, skilled and/or have appropriate communication
aids available to talk with patients, families and carers about consent for care.
•
Use multidisciplinary care teams, including cultural as well as clinical expertise, to support
culturally appropriate cancer care for Aboriginal and Torres Strait Islander peoples, particularly
in rural and remote areas.
•
Improve availability of Aboriginal and Torres Strait Islander Health Workers, hospital liaison
officers and cancer coordinators (with both clinical and community knowledge) to actively
assist patients, families and carers to navigate the system and access services.
5b
Ensure Aboriginal and Torres Strait Islander people receive best practice care
Enablers
16
•
Establish and follow agreed and appropriate referral pathways (including referral to supportive
and palliative care) that are known and supported by practitioners (including Aboriginal and
Torres Strait Islander Health Workers and nurses).
•
Understand and address barriers to accessing cancer services (including those between public
and private systems).
•
Ensure practice and service guidelines are designed and implemented with consideration of
best practice cancer care for Aboriginal and Torres Strait Islander people.
•
Ensure active follow up of Aboriginal and Torres Strait Islander people with cancer, preferably
carried out by an Aboriginal or Torres Strait Islander person, immediately after diagnosis and
throughout their cancer journey.
•
Identify the supportive care needs of Aboriginal and Torres Strait Islander patients and families
(including youth and children) at time of diagnosis and throughout the rest of the cancer
continuum through the use of culturally relevant validated tools as part of routine practice.
•
Ensure access to supportive care services tailored to the specific social, practical, and cultural
needs of Aboriginal and Torres Strait Islander people and families, including children.
•
Ensure that Aboriginal and Torres Strait Islander people affected by cancer are aware of the
availability of these supportive care services across the cancer continuum.
•
Ensure psychosocial care needs, including social, emotional, spiritual and cultural wellbeing are
explicitly considered in the identification of cancer care needs.
•
Provide ‘right place’ cancer care as close to home as (safely) possible. Less complex aspects of
care can be delivered closer to home, particularly as modern technologies make it more feasible
to link experts into multidisciplinary care teams over distance.
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
•
Extend the safe use of innovative approaches, such as telemedicine, to minimise the need to
travel for care.
•
Ensure that travel schemes and accommodation arrangements meet the unique needs of
Aboriginal and Torres Strait Islander people, including cultural obligations, and facilitate access
to, and completion of, treatment or other aspects of care (across the whole cancer continuum).
•
Provide information that addresses the concerns and needs of Aboriginal and Torres Strait
Islander people across the cancer continuum, in formats and language/s that are accessible
and culturally appropriate.
•
Increase understanding of, and address barriers to, access and use of palliative care services by
Aboriginal and Torres Strait Islander people.
•
Encourage cross-sector organisations (such as charities and consumer support organisations)
to better meet the needs of Aboriginal and Torres Strait Islander people with cancer, their
families and carers.
17
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Priority 6
Ensure families and carers of Aboriginal and Torres Strait Islander people
with cancer are involved, informed, supported and enabled throughout the
cancer experience
Families and carers provide critical support to Aboriginal and Torres Strait Islander people affected
by cancer and they themselves may need support to ensure they can effectively assist with their
loved one’s cancer experience. Families and carers often play a significant role in a patient’s cancer
experience by providing emotional, social or financial support, and assist in communication
between the patient and health professionals. Families and carers should have access to information
and supportive care services to ensure that they can continue supporting their loved ones. 9
Enablers
•
Identify and appropriately incorporate the role of families and carers in supporting Aboriginal
and Torres Strait Islander people with cancer.
•
Ensure that the psychosocial and practical needs of families and carers are identified
and addressed from the point of diagnosis, throughout treatment and in the transition to
survivorship, or into palliative care and beyond the end of life stage.
•
Ensure that families and carers have access to the information and services they need to
appropriately support and advocate for the person diagnosed with cancer.
•
Build the capacity of Aboriginal and Torres Strait Islander Health Workers, nurses, counsellors
and other health professionals to provide appropriate cancer information and support,
including to families with young children with cancer.
•
Ensure access to interpreters for Aboriginal and Torres Strait Islander people with cancer,
their families and carers.
18
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Priority 7
Strengthen the capacity of cancer related services and systems to deliver
good quality, integrated services that meet the needs of Aboriginal and Torres
Strait Islander people
Quality national, jurisdictional and local data are critical to understanding the variations in cancer care
and outcomes of Aboriginal and Torres Strait Islander people. Currently there is limited evidence or
data available to inform policy, health promotion, service provision and clinical practice initiatives to
improve outcomes for Aboriginal and Torres Strait Islander peoples. There is no national data on stage
at diagnosis and treatments received. Integrated pathways between various services are required to
strengthen the consistency and quality of care. This is facilitated through good system infrastructure,
including comprehensive data capture, timely information transfer and defined protocols and
standards. Additionally, targeted and prioritised research is required.
7a
Enhance data systems to inform better outcomes
Enablers
•
Establish data systems that facilitate coordinated and multidisciplinary care across jurisdictions,
levels of care (primary, tertiary), and in which the patient history is tracked.
•
Promote collection and analysis of Aboriginal and Torres Strait Islander patient, family and carer
perceptions of their cancer care experience.
•
Improve the identification and recording of Indigenous status, including on pathology requests
and reports.
•
Support the consistent reporting and analysis of national data on cancer stage at diagnosis.
•
Support routine national data collection, access and linkage to allow national monitoring,
reporting and inform strategies to improve cancer outcomes.
•
Link incidence data to treatment data, to provide a system-wide indication of patterns of care
and of time between diagnosis and access to treatment.
•
Use quality improvement processes to assess, inform and improve the extent to which cancer
services address the needs and preferences of the Aboriginal and Torres Strait Islander people
who use them.
19
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
7b
Targeted and priority research to inform policy, health promotion,
service provision and clinical practice
Enablers
•
Recognise Aboriginal and Torres Strait Islander cancer as a research priority.
•
Undertake research that produces evidence about the effectiveness of strategies to improve
the cancer outcomes of Aboriginal and Torres Strait Islander peoples to inform policy, practice
and service delivery.
•
Promote systematic evaluation of programs and services to build a more robust evidence base
including through internally driven activities such as quality improvement activities.
•
Ensure that priorities for research and evaluation are informed by areas of need, and are
identified and supported by Aboriginal and Torres Strait Islander communities.
•
Ensure that research is designed, conducted and reported with a focus on translation into
policy and practice, and communicated in plain language to relevant audiences and particularly
to Aboriginal and Torres Strait Islander communities involved.
•
Research and evaluation processes should be designed and conducted with Aboriginal and
Torres Strait Islander people throughout.
20
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Acknowledgements
The National Aboriginal and Torres Strait Islander Cancer Framework has been developed to inform
the work of Cancer Australia and for use by Aboriginal and Torres Strait Islander communities, the
Aboriginal community controlled health sector, health professionals and service providers, cancer
control organisations, researchers and policy makers within governments.
This Framework has been informed by a review of the available evidence and by listening to the
voices of Aboriginal and Torres Strait Islander people with a lived experience of cancer, and the
expertise and experience of people working in Aboriginal and Torres Strait Islander cancer control.
Cancer Australia is encouraged by the level of engagement expressed by over 500 individuals who
contributed to this Framework’s development. This included Aboriginal and Torres Strait Islander
people who have been affected by cancer, their families and carers; community leaders and
members; health professionals; service providers; organisations with a cancer control interest; and
policy makers and researchers. Cancer Australia would like to thank these individuals for sharing
their lived experiences and expertise.
The national priorities identified in this Framework should guide future directions in Aboriginal and
Torres Strait Islander cancer control at all levels in order to address the unwarranted variations in
cancer outcomes experienced by Aboriginal and Torres Strait Islander peoples.
Cancer Australia gratefully acknowledges the leadership of the Project Steering Group who
provided high level expert advice and guidance throughout the development of the National
Aboriginal and Torres Strait Islander Cancer Framework.
Professor Jacinta Elston (Chair), James Cook University
Dr Jason Agostino, National Aboriginal Community Controlled Health Organisation
Dr Siddhartha Baxi, South West Radiation Oncology Centre
Professor Tom Calma AO, Consultant to the Commonwealth Department of Health
Ms Liela Murison, Townsville Cancer Centre
Professor David Roder, University of South Australia
Ms Dawn Ross, Consumer Representative
Associate Professor Sabe Sabesan, Townsville Cancer Centre
Ms Violet Sheridan, Consumer Representative
Mr Rajah Supramaniam, Cancer Council NSW
Ms Meredeth Taylor, Commonwealth Department of Health
Professor Helen Zorbas AO, Cancer Australia
We also acknowledge the significant contributions of Menzies School of Health Research,
Associate Professor Gail Garvey, Ms Jenny Brands, Ms Bridget Kehoe, Dr Vikki Knott, Professor
Joan Cunningham, Associate Professor John Condon, Dr Bronwyn Morris and Mr Brian Arley who
undertook the development of the Framework with Cancer Australia.
Cancer Australia staff in the Indigenous and Rural Program who oversaw the development and
preparation of the Framework were Ms Jennifer Chynoweth, Ms Isabella Wallington, Ms Lauren
Kinsella and Ms Samantha Webster.
21
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Thanks and appreciation
Cancer Australia would like to sincerely thank the following organisations who participated in the
development of the Framework.
Aboriginal Health and Medical
Research Council of New
South Wales
Aboriginal Health Council of
South Australia
Cancer Council NSW
Cancer Council NT
Cancer Council QLD
Aboriginal Health Council of
Western Australia
Cancer Council SA
Aboriginal Medical Services
Alliance Northern Territory
Cancer Council WA
Cancer Council VIC
Australian Bureau of Statistics
Cancer Institute NSW
Australian Catholic University
Cancer Nurses Society of
Australia
Australian Indigenous Doctors’
Association
Cancer Voices Australia
Australian Indigenous
HealthInfoNet
CanSpeak
Australian Institute of Health
and Welfare
Calvary Mater Newcastle
Aboriginal Medical Service
Western Sydney
CanTeen
Charles Darwin University
Far North Queensland
Medicare Local
Flinders University
Geraldton Hospital
Heart Foundation
Indigenous Allied Heath
Australia
Indigenous Men’s Referral and
Assessment Service
James Cook University
Kambu Aboriginal and Torres
Strait Islander Corporation for
Health
Kimberley Aboriginal Medical
Services Council
Kimberley Pilbara Medicare
Local
Lung Foundation Australia
Australian Women’s Health
Network
Congress of Aboriginal and
Torres Strait Islander Nurses
and Midwives
Ballarat Health Services
Department of Health
Breast Cancer Network
Australia
Department of Health ACT
Menzies School of Health
Research
Department of Health VIC
Mercy Hospital for Women
Department of Health NT
Metro North Hospital and
Health Service
BreastScreen VIC
BreastScreen QLD
22
Cancer Council Australia
Majalla Inc.
Mater Health Services
North Queensland
BreastScreen WA
Department of Health NSW
Bowel Cancer Australia
Department of Health QLD
Bupa Health insurance
Department of Health WA
Mount Druitt Community
Health Centre
Cancer Council ACT
Department of Health SA
Mura Kosker Sorority Inc.
Ministry for Health NSW
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
National Aboriginal and Torres
Strait Islander Health Worker
Association
Tasmanian Government,
The Department of Health
and Human Services
National Aboriginal
Community Controlled Health
Organisation
The Alan Walker Cancer Centre
National Breast Cancer
Foundation
National Health and Medical
Research Council
Northern Territory Medicare
Local
Nyamba Buru Yawuru Ltd
Peter MacCallum Cancer
Centre
Pink Diva’s Breast Cancer
Support Group, Ipswich & West
Moreton
Port Kennedy Association Inc.
Prostate Cancer Foundation of
Australia
Queensland Aboriginal and
Islander Health Council
The Lowitja Institute
The Society of Hospital
Pharmacists of Australia
Thursday Island Primary Health
Care Centre
Torres Strait and Northern
Peninsula Area Health
Community Council
University of South Australia
University of Sydney
University of Melbourne
Victorian Aboriginal
Community Controlled Health
Organisation Inc.
Victorian Aboriginal
Community Services
Association Limited
Quit Victoria
Victorian Cervical Cytology
Registry
Royal Australian and New
Zealand College of Radiologists
Westmead Breast Cancer
Institute
South Australian Health and
Medical Research Institute
Westmead Hospital
St. Vincent’s Hospital
Melbourne
West Moreton Hospital and
Health Service
Sydney Local Health District
Winnunga Nimmityjah
Aboriginal Health Service
Tasmanian Aboriginal
Centre Inc.
Woomera Aboriginal
Corporation
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National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Glossary
This glossary sets out how the following terms have been used in this Framework.
24
Cancer continuum
A commonly used term in cancer control referring to the broad range of
areas in which cancer-related services are provided, including prevention,
early detection, diagnosis and treatment, survivorship and palliative care.
Cancer control
A term used to describe the broad range of activities carried out to
address the impact of cancer by reducing cancer incidence and mortality
and improving quality of life for people affected by cancer, through the
systematic implementation of evidence based strategies for prevention,
screening, early detection, diagnosis, treatment, supportive care, followup care, palliation and end of life care. 11
Cancer related
services
The broad range of services likely to be linked to cancer control in
any way, including prevention, immunisation, screening, diagnosis,
treatment, supportive care services, survivorship services, palliative
care services, allied health services, accommodation, transport, health
promotion, social security, etc.
Community based
services
Services that are based in and provide services at the local community
level; not necessarily health services. For example, community based
services might include a resource service, youth service, counselling
service or a cleaning service.
Community
controlled primary
health care service
A primary health care service with governance arrangements such as a
community board, that allows the local Aboriginal and/or Torres Strait
Islander community to be involved in its affairs in accordance with
whatever protocols or procedures are determined by the community. 30
Cultural
competence
Cultural competence is used in this Framework to refer to organisational
systems to describe quality care to clients with diverse values, beliefs and
behaviours, including tailoring delivery to meet patients’ social, cultural,
and linguistic needs. It requires institutionalising of cultural knowledge,
and adapting service delivery to reflect understanding of the diversity
between and within cultures. 31, 32
Culturally safe
‘A culturally safe environment is one where we feel safe and secure
in our identity, culture and community’. 33 An environment that is
experienced as culturally unsafe will be seen as alienating, confronting,
difficult and/or frightening; the individual may feel their culture is denied
or invisible and that their views and wishes may not be respected. The
Royal Australian College of General Practitioners refers to cultural safety
as an environment that is ‘safe for people: where there is no assault,
challenge or denial of their identity, of who they are and what they need’,
where there is ‘shared respect, shared meaning, shared knowledge and
experience, of learning, living and working together with dignity and
truly listening’. 34
Enabler
A term used in this Framework to describe factors that may help in
planning or reviewing strategies to address each of the priority areas
for action.
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
Health professional
A term used in this Framework to refer to a person involved in providing
health care, including doctors, nurses, Indigenous Health Workers,
psychologists, oncologists, or counsellors.
Multidisciplinary
care
Multidisciplinary care is an integrated team approach to health care in
which medical and allied health care professionals consider all relevant
treatment options and collaboratively develop an individual treatment
and care plan for each patient. Multidisciplinary care involves all relevant
health professionals discussing options and making joint decisions about
treatment and supportive care plans, taking into account the personal
preferences of the patient. 35
Palliative care
Palliative care is an approach that improves the quality of life of patients
and their families facing the problem associated with life-threatening
illness, through the prevention and relief of suffering by means of early
identification, assessment and treatment of pain and other problems,
physical, psychosocial and spiritual. 36
Primary health care
services
Health care delivered through the General Practice sector, Aboriginal
Community Controlled Health Organisation (ACCHO), community
health services and/or state or territory primary health care services.
Quality
improvement
processes
Ongoing efforts to improve the quality of care, with an emphasis on
improving processes and systems rather than individuals. Evidence shows
that although health professionals believe they deliver good quality care,
there is usually quite a gap between what is considered good quality care
and what health professionals are able to deliver. Quality improvement
processes use objective sources of information, for example, audits of
patient records, to identify gaps where quality could be improved; to
implement a change in routine practice to address the gap, and then
review the data source to see if any improvement has occurred.
A commonly-used approach to quality improvement is the Plan, Do,
Study, Act (PDSA) cycle. An important aspect of quality improvement
is that organisations use their own data to assess their own performance
against identified indicators of quality care – assessment is not done
externally.
Supportive care
services
Supportive care is an umbrella term used to describe services which may
be required by those affected by cancer. It includes self-help and support,
information, psychological support, symptom control, social support,
rehabilitation, spiritual support, palliative care and bereavement care.
All members of the multidisciplinary team have a role in the provision of
supportive care. In addition, support from family, friends, support groups,
volunteers and other community-based organisations make an important
contribution to supportive care.
25
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
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National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
The artwork ‘Our Journeys’ represents the experience of Aboriginal and Torres Strait Islander people with cancer.
The white dots are the journey of each individual; the patterned areas are the different landscapes and regions
of Australia; and the colours are the different cancer types. Cancer Australia, as the leading agency shaping cancer
control in Australia, is depicted by the central ochre meeting place which draws stakeholders together to share ways to
improve cancer outcomes. The kangaroo prints and the fish leading to and from the meeting place represent the flow of
information and engagement between Cancer Australia and Aboriginal and Torres Strait Islander people.
Artist: Jordan Lovegrove, Ngarrindjeri, Dreamtime Public Relations, www.dreamtimepr.com
29
National Aboriginal and Torres Strait Islander Cancer FRAMEWORK
canceraustralia.gov.au
© Cancer Australia 2015
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NFAT 08/15